The story of Koko Prabu
Oyik is my son’s nickname. He was born in Central Java, Indonesia, weighs 1.5 kg and looks like his eyebrows are together with thick fur all over his body.
Apart from that, his hands are all shaped like the letter “v”, the right hand has 1 finger and the left hand has 2 fingers.
He was born without making a sound even though he cried, and he also couldn’t receive breast milk directly from his mother’s nipples.
Because he had a high palate and had to wear an NGT, Oyik ended up being treated at the hospital until he was 5 months old because he was often dehydrated.
Now Oyik is 24.5 years old and growing healthy even though he looks thin with a weight of only 27 kg and he is non-verbal and cannot walk, perhaps because we live in a developing country where there is still a lack of health facilities and inadequate access to health. Moreover, in my country, rare diseases have not received recognition from the state for their existence, so we fight individually for the existence of our children. Come on to Indonesia… Oh yes, visit us at www.cdlsindonesia too… txs n GBU ALL
Happy celebrating Rare Desiase Day